On Facebook someone posted a picture of a young couple with Down Syndrome on their wedding day. I posted a brief comment saying, "Wonderful."
Well, I got a really nasty message saying that as a 'disability leader,' I should know better than to fall prey to inspirational porn. The writer was more long winded than that, let's just say it was a blistering attack on my integrity as a person and my role as a 'disability leader.' I was quite stung by the whole thing. I'm used to this blog community where people debate and disagree but seldom personally attack one another. I guess I got a bit spoiled. Before I show you how I responded, let me address this 'disability leader' thing.
I have never claimed to speak for the disability community, I am only one voice. I have only lived with my disability for a bit over five years and would never dare presume to have the depth of knowledge and understanding of those who have a lifetime of experience. If I am guilty of anything, in that regard, it's using the voice that I have and fighting the battles that I face. I know that many of my opinions aren't shared by others in the disability community or in the community of service providers - but they are still my ideas and I have a right to have them and to express them. As myself, not as a 'leader.'
I responded by placing this comment under my previous 'wonderful' comment:
just received a private note, quite nasty, asking what I meant by my
comment 'wonderful' here on this picture. I was surprised because I
thought 'wonderful' meant 'wonderful.' However, let me be clear I think
it's wonderful because I like seeing pictures
of people in love, people getting happily married. I don't think it's
'wonderful' because they have Down Syndrome and are getting married.
Part of my 'wonderful' IS however, related to the fact they have Down
Syndrome. Let me explain: A time, not long ago, people with intellectual
disabilities of any type, would have been forbidden to even date
someone. They were separated by gender, they were punished for
relationships. Here in Canada (warning ... stop reading if you are
uncomfortable with violent imagery) a doctor, working in an institution,
castrated men with Down Syndrome and sold their testicles for scientific
research, women with intellectual disabilities were sterilised against
their will. We have been brutal regarding love and sexuality, BRUTAL. I
say 'wonderful' in the most heartfelt way because BECAUSE ... it wasn't
long ago that this would not have happened, would not have been
celebrated, would have caused outrageous controversy. So, when I said
'wonderful' I meant exactly what I said, 'wonderful.'
What I didn't say, because it wasn't germane to the subject at hand, was how that attack made me feel. Further, I didn't say that my immediate reaction was 'hold on ... you a-hole ... couldn't you ask me what I meant before you told me what I meant.' Years ago I worked with a young woman who said, 'The thing about cerebral palsy is that you never get to finish your ...' And she was right. I watched over and over again as she was in conversation with others that people would get impatient with the pace of her speech and just jump in and finish her thought for her. It drove her bananas. What really pissed her off though was when others with cerebral palsy did it to her ... she felt that they should know better.
And I guess that's how I felt. Those of us in the disability community know what it's like to have others, without disabilities, tell us how we experience our lives and our world. We resent that they don't ask. Resent it.
So, we should know better and do better.
Don't you think.